Tag: invisible illness

Since opening my eyes to the injustices I face on a daily basis and deciding to speak out, stand up and create change, it has been a rude awakening with an upward struggle of epic proportions.

When you realise the discrimination which is faced by people like yourself, who have disabilities it is daunting to imagine ever overcoming the stigma. The world is slowly becoming more aware of the struggles many different people face with the accessibility to people’s lives through the internet allowing for us to see the most vulnerable amongst us as well as the most privileged. This revolution of information is empowering to certain minority groups and marginalised people, allowing us to have a voice and a platform to discuss things which have never truly been heard – on a mass scale.

There is still a massive issue with how people see disabilities and chronic illness, especially those which are “unseen”, such as mental illnesses, neurological conditions, autoimmune diseases, heart disease, diabetes, dementia, and even cancer, the list goes on…

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. An individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.

For those who do not know, I have been diagnosed and living with disabilities most of my life, they are all “invisible”, even if not to me.

With such a long list of chronic illnesses and disabilities, I am considered complex and have as a consequence been treated as difficult or been left to fall through the cracks of the system, not fitting into a single box to receive medical care.

Due to this “able” world we live in – I can’t even access medical care as the NHS in England does not recognise my disabilities as housebound? Even though I have not been outside, alone, for over 9 years, and sometimes can’t leave my home even when assisted, meaning at this present time (as I have no way of getting to the doctors when they are open even if I was able to go out assisted) I have NO medical care whatsoever; my medication is up for review and because of my lack of access to the services, to get reviewed I am without any medication also.

Now tell me how a person like myself is to feel?

The strongest feelings which sore through me are that of being left to die, abandoned once again, rejected by the world, by society. Being considered “high functioning” is a joke when all this apparently translates to is that of knowing my rights and being aware of my own mistreatment; as it certainly does not mean I can “function”.

Friends and family often forget about these “invisible” disabilities, asking you to go places you can’t, or not making any effort in including you in plans as they assume there is no way for you to be accommodated. Being spoken about as if you were a child and unable to make your own choices on what is best for you. An enormous pet peeve of mine is being told:

“You seem fine”

“You seem better today”

“You seem so relaxed and calm”

Unfortunately these well meant sentiments are damaging, pushing us back down, or inwardly; left feeling even more misunderstood or under the microscope. Often the reality is you are NOT fine, relaxed or calm, it is just you have adapted your behaviour as best you can to not alienate yourself, or that the symptoms you have are internal and there is no way anyone would ever “see” them, however this does not mean they are not there. As for “you seem better today”, well this one is by far the most stigmatising and leads to the most misunderstandings.

So take note able people – yes, we have some good minutes, hours, days, weeks and some even have years, this does not mean we are “cured” or that we are “better”, it just means like everyone else we fluctuate in moods, hormones; and that life can treat us well or bad which can alleviate or compound our issues. This need of yours to tell us we are “looking better” may be well meaning but it is truly just a way for your privilege to further separate us, it is as though you felt happier that our disabilities are quiet and not present to you at that moment, making you assume you can tell us how we feel or what you hope us to feel. You do not do this because you wish to be unkind, in fact the motivation seems to be the opposite, however the affect these simple words jumbled into a sentences causes, is unimaginable to those who have not experienced this existence.

In order to “cope” or seem like I am “coping” sedation with drugs, such as painkillers or cannabis, allow me to shut down most of my thoughts and concentrate on being present with my friends and family for short periods of time which means being on a unrealistic high around most people, confusing the situation more, as you are never truly yourself. Many people like myself take drugs for pain relief or some kind of mind altering substance in order to “function” as best they can in company. Through societal pressures to conform, we do this more for you; the able ones. Many of us learn early on how we are received when we are “out there” with our disabilities on show – as much as you can when they are unseen. After being told we are attention seekers, drama queens, liabilities, hand-fulls, trouble, a worry, or after just losing people as they up and leave because you are “too hard work”; this is when the survival skills kick in, conformity becomes your best defence, until you are unable to maintain the facade and become the reclusive “weirdo” society deemed you to be all along.

There are so many things to discuss with regards to being in an able dominated world, with everyone’s story being different. These are my musings on the subject at this present time, with the hope to add more to this discussion. Since being rejected and my civil liberties being taken from me I have been awoken, my only chance to survive is to change this, is to stand up and scream at the top of my lungs;

“I will not go silently, you can’t erase me, I have rights and I shall be heard”

For all those who call me: “a victim who wears her disabilities as a badge of honour” you seem to be confused?

The way to survive after being a victim, marginalised, discriminated against and continuously pushed down is to play to your strengths and extend your hand to those who can not even do this, there is no shame in having been a victim or even if you are right now. Victim is NOT a dirty word! Chances are if you are a “victim” it means you have survived – you have faced something which unless experienced by others they will not understand, all experiences are unique and can be hard to understand even when you have the same disabilities – however checking your able privilege is not difficult it just means you must place your ego to one side and accept another humans experience.

Even though my fight may not always be as strong each day, as some days feeling defeated is all that can be felt, just breathing is too much to bear. The commitment inside me to this is my purpose for existing. Not being able to have children, with no blood family; this is my legacy, my nurturing, me giving of myself as selflessly as possible. This is my art, my activism, this is my life and not a “trend” or “fad” for you to disagree with.